The last thing any parent wants to hear is that there is something wrong with your child, whether it is something small or something scary and big. You go through your pregnancy hoping that everything is OK, sighing with relief at your mid-pregnancy anatomy scan, counting the kicks every day and wondering if you should buy your own Doppler so that you can check the baby’s heart every day (not necessary). Labour goes very well and your baby is born into this world happy and as healthy as can be; passes all the newborn tests with flying colours and starts to grow fast, fitting into 3-6 month clothes before her three month birthday. Her first pediatrician visits go by well, no issues. And then there is that one visit.
A few weeks ago I took Luna in to see her doctor as I was worried she had an upset tummy (she didn’t, I was just being a real first time mum and worrying about everything). I’m so glad I took her in, because although she was fine tummy-wise, her doctor detected a heart murmur. I have to preface this with saying that our daughter is a little wriggly bum, she hates sitting still, especially when she’s being examined by the doctor. This time she had actually fallen asleep in my arms in the waiting room, so the doctor was able to get a good listen to her heart. She did say that most murmurs are nothing, but she referred us to a cardiologist at the hospital just to be sure.
I was a bit shaky when I got home and made the appointment, but I do tend to always look on the bright side of things and was determined not to worry. I also know at least 5 people with heart murmurs that do not affect them in the slightest. Anyway, we had the appointment last Wednesday and were there for 6 hours. Luna’s cardiologist happens to work out of the pediatric clinic in the New York Hospital Queens, so there were quite a few people there (next time I must remember to bring snacks – lots of them!). It started off with an EKG (Electrocardiogram), blood pressure tests, and oxygen levels, weighing and measuring. At exactly 13 weeks she weighed in at 13 lbs 12 oz and measured 24 inches – so still growing up and out at a very good rate. The tests took a while because it’s hard trying to get a 3 month old to lie still while you attach electrodes to her skin. Once that was all done we had to go back and wait for the doctor to see us for the next steps…
Because there were more! The doctor checked Luna’s heart, confirmed she heard the murmur too and sent us back out into the waiting room to wait for the most important test, the Echocardiogram. I was actually surprised that Luna was taking all of these tests so well – she did try to pull the wires off her body during the EKG (I mean, who wouldn’t?!), and the blood pressure machine was acting up so I actually had to nurse her so that she would remain calm while the technician redid it several times. I didn’t realize what a nightmare we had waiting for us… Basically an echocardiogram is a sonogram of the heart. I have wonderful memories of the sonograms I had during my pregnancy. I do not have wonderful memories of this. It started off OK, and I really didn’t think it would take longer than 20 minutes or so. Wrong! Two technicians and two parents and we still couldn’t get her to stop wriggling, then squirming and then pulling and then screaming. Luna won’t take a pacifier and she’s fussy on a normal day, so once she was bored of being held on a table for 10 minutes she made it very clear she wanted off. The technicians managed to get a good portion of the images they needed done, but when the doctor came in after 45 minutes Luna was so upset that she told us to take some time to calm her down and get her to sleep. I did hear her mention the word “PFO” so as soon as we got Luna to sleep started to Google it and immediately wished I hadn’t.
30 minutes later we had a sleeping baby in her stroller and back in we went. This time the doctor finished the echo off herself, which took another good 45 minutes, with a lot more crying and wriggling. By this point I was nearly in tears myself, and started getting worried about all the acronyms the doctor was mentioning to her assistant. For all I know about the heart they could mean anything! Once it was finally over we got Luna dressed and while I was nursing her to calm her down the doctor explained what they had found.
I’m going to preface the following by saying that although it was and still is distressful for us to find this out, we are very happy that this was detected so early and that our daughter is in no kind of danger or pain right now.
Luna’s cardiologist explained that they had found a medium sized hole in Luna’s heart, between the two atria (the top chambers), with a shunting of blood between the two sections. In more medical terms, Luna has a congenital heart defect called Atrial Septum Defect with Pulmonary Stenosis. The size of the hole leaves it possible for it to get smaller or larger over time. If it doesn’t get smaller by school age she will have to have an operation to close the hole. Usually in this day and age most of these types of CHDs can be fixed by inserting a catheter through the groin into the vein, so no need for open heart surgery. Also, there are often no real symptoms apart from the murmur and for this reason ASDs can often go undetected. If there are symptoms as a child then they could be one or more of the following: getting tired easily during exercise, breathing issues, catching pneumonia frequently and slow growth. Luna hasn’t had any issues yet, but will of course be monitored. Issues can appear later on, maybe as a teenager, but usually as an adult: higher risk of a stroke, enlarged heart, blood vessel disease, heart attack…
Yes it’s bloody scary. And even though we know that she will be monitored very closely with check-ups every 4 months with the cardiologist, and that she is obviously very healthy, it doesn’t really make it any easier. We have had a week to digest all of this information now and we have promised ourselves to be positive, not to Google too much apart from reputed sites (per doctor’s recommendation) and to talk to people who also have children with CHDs. We are going to make sure that this does not affect Luna’s quality of life. I did have to stop myself from wondering if it was my fault in any way, but I really was so healthy during my entire pregnancy, and also stopped smoking immediately when we found out (before 5 weeks). But it’s one of those things that can literally happen to anyone, so there is no point in me beating myself up about something that we most likely couldn’t have prevented.
And as Cesar says… She’s a Castro-Hughes so she was born a fighter! We have both been through enough ups and downs and amazing and horrific things in our lives and are as strong as oxen – she is part of each of us so double that strength and it is our mission to make sure that she mainly experiences ups and amazing, hopefully less of the downs and the horrific.
(It helps me to write all of this down. It’s always helped me to write everything down, the easiest way for me to express something that I am having a hard time talking about. I also want to share something that maybe one day will help someone else going through the same thing. Again, no one ever wants to hear that there is something “wrong” with their child, and really there isn’t anything “wrong”, just something that may need to be fixed down the line. I always will be positive about everything, especially this as there is no reason to fear the worst).